CT Children's MS7 night nurse, you will not be forgotten!

      This blog is titled "My Beautiful Life...with ms".  So, maybe it should strictly pertain to MS?  Then again, it  is my blog.  So....
       As some of you know, my 3 1/2 year old daughter had heart surgery on Monday.  It was a routine & planned surgery to repair a common defect.  She was diagnosed with this Sinus Venous defect in her Superior Vena Cava and Atrial Septal defect in utero.  So, we have known about it since then.  The cardiac surgeons were just waiting until she was big enough to repair it.  We have had almost 4 years to get acquainted with the idea of this surgical repair.  Monday was her surgery day at CT Childrens Medical Center.  I can most surely say, with 110% positivity, that we were NOT expecting that.  WOW.  We got used to hearing friends with the same repetitive statements "I can imagine" or "Everything will be OK" or "It must be stressful".   Unless you have had a child having open heart surgery or brain surgery or in a major life threatening accident I can assure you, you have NO idea. Not that other issues aren't important and scary, but this took stress as we knew it to a completely different level.
      When you become a parent you take on this whole other burden of fear and protection over your child.  Your stomach almost drops out when they trip, fall, are away from you, break something, etc...   Now, you parents, think of sitting in a waiting room for 5 hours knowing your child is a few doors down in a huge operating room filled with about 20 people, many many machines, bags of emergency blood,  and your child...lying there... with their chest open and heart stopped and emptied of blood while the surgeon works to repair a hole in the tiny space of a vein leading to the heart.  I knew for 4 of those hours that I would never have my daughter back and if I did that one of those many "very rare complications" would leave her unable to breathe on her own or walk or without the ability for her body to control its own heartbeat. Her surgery ended and she was still(miraculously, in my mind) alive.  We rushed into the PICU room just as she was waking up.

 We were NOT expecting that either...what she looked like.  She was still on the pacemaker because her heart was still "disoriented".  She had catheters everywhere, in 3 limbs and her neck, some venous and some arterial as well as a central line.  She had the pacemaker and heart monitor probes taped all over, a urinary catheter.  She had a (way bigger incision that we were prepared for) down her chest and a chest tube coming out of her abdomen under the incision to drain fluid from her heart.  My god!!  I must say, CCMC and doctors (Dr Salazar & Dr  Bernstein), surgeons(Dr Kirshbom), nurses(Jill Sullivan((you should have a page of your own right up there with the Docs)) & too many more to name) and staff were amazing.  There are so many little details of the amazing things they did, like let Amelia drive a little Barbie Escalade down the hall before surgery.  Child Life  provided some amazing services that really cheered up Amelia and helped speed her recovery ( a Harp player came to her room, a Craft Cart came by each day and left crafts and stickers and such.  They even sent a Golden Doodle around to visit the kids).  We did have a cheer up squad of our own as well (Our friend Jim and the Hartford Fire Department came by with a truck and gifts, she got flowers from her Aunt and Grammie, etc...) She actually rebounded quite fast and each day preceding the surgery some other line or drain was pulled and soon she was allowed to leave the PICU and transfer to MS7, a "regular care" floor.

 Along with leaving all our fantastic PICU Docs and nurses behind....we also left the fantastic care behind.  I will keep this part short (there are SO many details I would just love to include but won't).  I will just say, to the MS7 Night Nurse on duty November 12, you will unfortunately not be forgotten.  As we recall memories from this ordeal and stay at CCMC the fact is that the care from this nurse and lackadaisical atmosphere from the entire MS7 floor, in general, will overshadow those amazing people at CCMC.  Sadly, the positive of this story is it prompted us to want to bring Amelia home.  I just couldn't handle one more night of holding her down for procedures, blood draws, x-rays, meds, etc...  So, hesitantly, we headed home....less than 2 full days after double bypass surgery.
    We have been home for less than 24 hours.  Amelia is doing amazingly wonderful..and so are we.  There's nothing like home to make you feel better.   I did not want to be discluded from being in any room anywhere with Amelia.  So, I left Crane at home for this hospital trip.  I had to navigate busy hospital corridors, cafeterias, elevators, procedure rooms and more without the help of my Service Dog.  I have had a few incidents lately that have unfortunately left me not very confident in the public to react appropriately in regards to her (here is a good article:http://www.anythingpawsable.com/things-service-dogs-public/#.Vkdwn3arTIU).  So, along with not having her,  the fact I got about 10 hrs sleep(split up over 3 1/2 days) and was under an amazing amount of stress....I was really appreciative to be home in my comfortable, predictable environment.  All of those factors: unfamiliar environment, stress and lack of sleep are not at all ideal for people with MS.  I am very surprised my body didn't just shut down.  Then again, it knew something was going on in my life that just was more important than it at that time.
    So here we are, at home. Surgery was done 4 days ago.  Amelia is on nothing more than diuretic and motrin. We do have 6 to 8 weeks of follow-up tests, doctors appointments, keeping her healthy and rested.  However, She is ready (and trying) to take on the world and we are almost ready as well!

That is NOT OK to ask!

 People have been asking lately how I am doing.  They struggle with what are the right words to say.  Sometimes I intervene because I know what they are trying to ask.  Sometimes I let them struggle as they find a way to come out with some awkward question.  It's horrible of me I know,  but I feel like if they want to ask...they should find a way to.  Also, I struggle daily with feeling awkward and uncomfortable, so why shouldn't they for the 10 seconds it takes to form a question.  I told you, it's horrible of me I know.  Honestly, I don't mind being asked.  I feel that if my friends and family read my blog than they would know, but not everyone has the time or desire.  If I minded people knowing about my MS and how I am doing, I wouldn't share so freely here in writing.
So, how am I doing? I am doing exactly how MS portrays itself, good and not so good.  My Tysabri infusions and other medications seem to be keeping all major symptoms at bay.  Tiny symptoms(which I once thought were insignificant) plague me here and there.  Like the top of my head being completely numb, or inability to focus with me left eye(my only eye mind you), severe migrating pain after having dental work, biting my cheek so often that there is a permanent crease inside my mouth because I can't feel anything on the right side of my mouth.  They are little things and I don't want to pester the doctor every single time something new pops up....but is does make me nervous.  Even a tiny symptom could be the onset of a new lesion.  So, although I don't call the doctor each and every time, I do prepare for the worst.  You know those annoying people that must have every little thing in order and their house spotless before they go away.  Well, that's me!  EXCEPT.....  Each and everything on my To Do list is top priority because of this.  Things that could usually slide until tomorrow, or next week, or next month.  They have to get done today for I don't know if one of these "insignificant" symptoms is a sign of something bigger.  I don't mean to sound as if I have the worst illness known to man or I am going to die at any second.  I do realize that many other people are not as blessed as I am.  There are people not as "lucky" to have an invisible illness.  there are people with Cancer and imminent terminal illnesses.  I say imminent because MS is progressive, there is no denying that.  MS will be the eventual cause of my death....it will just drag out for years and years. Anyway, every morning I write my To Do list on the fridge.  Every little thing:

And every day it is a race to get everything done, along with the usual: Make sure the fish have a clean tank of water, hampster cages clean and hamsters fed, rabbits fed and watered, dogs have a weeks worth of food, floors are clean, laundry is done, dishes are done, bathrooms are clean and have extra toilet paper, front porch is swept, garbages are out, car is clean, banking is done....it goes on...

Really though I have been doing good.  Sometimes so good that I actually leave Crane at home.  Most times I regret the decision, but only after it is too late.  I go off to run my usual errands without her because I am very familiar with my stops.  Then, I unexpectedly stop somewhere I don't usually go and I find myself lost. The aisles are small, the floor is hard to maneuver, there are a ton of people...something...  So, I make it to the car and just come home.  When I get here, Crane is right there to give me the "I told you so" look. 

 This brings me to another subject I have been struggling with.  Everyone who really knows my journey or has read my blog knows what I went through to get Crane, how long I waited, the money I had to raise, how I had to leave my family for two weeks to finally train with her, etc..  Sometimes now I hesitate to bring her places because of all the questions I get from people.  Questions they shouldn't be asking like "Is she still in training"(meaning "why do you have her"), Is she your dog (meaning "why do you have her"), Why do you need her? Is she a therapy dog? The list goes on.  It is NOT OK for people to ask these questions.  I answer them, sometimes honesty and sometimes I just make shit up. It makes me feel awful. Like she is just an accessory.  Like I don't need her.  That is the look people give me, that I don't need her.  The right questions to ask? What does she do for you? What is she trained for? Where was she trained? Any compliments are OK too: She is beautiful, she is so well trained, she must be a big help (she gets these comments a lot and I love it).  Of all the things she does for me, I guess the most important thing, why she is just SO amazing, is that she makes me look like I don't need her.  Honestly, sometimes I don't.  However, she helps me even when it doesn't appear so.  Just a little tension on her leash or handle stabilizes me, helps me walk in a straight line.  Just her setting the pace helps me maintain my balance.  I know if she is walking steadily forward that there is nothing in front of me to trip on.  Just her being at my side lets me know I am not going to bump into anything on my right.  See, I never see her when we are out.  She is in my blind spot.  Sometimes my kids will tell me how someone "sneaked a pet" or she did something funny.  That's the amazing part.  I don't even see her.  Just because I don't see her though, doesn't mean I don't need her.

Living the dream!

I guess children are always what drove me.  I used to teach riding lessons to kids, help kids, babysit kids.  I used to make plans to be a mom, thinking maybe I would adopt before I even desired marriage.  It was more than an internal clock.  It was different than that.  It was more of fulfilling the person I should be I guess.

  My horse was my child "back then".  I spent hours on end and days on end with her.  I used to take her jogging with me.  I took her to college (Kentucky) and spent more time in the barn than at school. My parents thought she was the only grandchild they would ever have.  My mom would sew her blankets and saddlepads.  Her (my horse) and I would have long talks and walks and I was even known to sleep in her bed rather than mine.  I ended up getting married. Family and friends would push me towards kids, saying "you will never know how your life will change, how it will teach you commitment or bring you joy until you have kids".  I assured them I already knew all that.  I had a horse.  She needed me just the same, brought me joy just the same, taught me commitment just the same.  I mean...I had to feed her 3 times a day, every day, pay for all her needs, etc..  I had her since she was a year old.  Then I had my daughter.

  OH....MY....GOD....Life change?  Biggest understatement ever.  It was then I realized the conspiracy of the "parents" of the world: To bring others right to the brink as those before convinced them to do.  I raised my daughter, part of that time as a single mom.  In that circumstance, there is no one to back you up, no one to take over when you are sick..or tired...or have to work...or...anything.  I did it though.  It was SO difficult.  However,  looking back, all those times when I had no one to lean on, no one to take over...those were the times her and I bonded the most.  Those times were something that most married parents don't have.  To this day, when things get tough, her and I fall back on those times that it was just the two of us.  It has a strength I cant explain.
  My "drive" kept tapping me on the shoulder, pushing me...shoving me.  I knew I wanted more kids, a big family. I had absolutely no idea how I would get there, but that was the goal.  I married my current husband, bottom line, because he was a good dad to my daughter.  Of course, we had more kids.  First my son...

 ... then another daughter.

...then we realized ...they out-numbered us.  Then friends and family started to tell us "it gets easier as they get older".  Let me tell you,  it is not getting ANY easier.  I leave the house 5 times on normal days only to get them to school and back.  My mom day begins at 5:50 am and ends between 9 and 10 pm.  I do get 2 1/2 hours off (for the first time in 3 1/2 years), but most of the time that is filled with school duties (volunteering, coffee hour, emailing teachers, checking grades, preparing for when they get home, etc..).  I look after a friend's children after school some days.  So, there are 5 of them.  They run and yell and play and..sometimes bicker and fight.. and mess things up and break things and eat everything and drive me utterly crazy.  And then when it ends and everything settles down and I realize I have made it past the breaking point and to the other side, alive.  THAT is the feeling I love.  That is my drive
   My children are what drives my energy, my spirit, my strength.  They are all I thought of when I was in the hospital being diagnosed with MS.  They are why I had to come home and why I had to get better.  Without them, there would definitely be some days I would not even get out of bed but they need me to. Or even something as simple as when Al is away for days and I am completely exhausted and all the kids are sick and all I want to do is sleep for just a little bit and someone needs a chocolate milk in the wee hours of the night and my body doesn't work and my eyes don't work and I don't have enough energy to go up and down the stairs. I cant do it.  I just can't.   But I do.
                                         Nothing is more important to me than my children.

  Our youngest daughter, Amelia, has a heart defect.  It has been observed since she was in utero.  Now, she is old enough to have it repaired. She is scheduled for heart surgery later this month.  The surgeons are very positive and assure us it is a “routine” surgery. The surgery will be done at Connecticut Children’s Medical Center on October 26^th.  She is expected to be in the hospital for approximately a week.  During this time Al and I will both be staying in  Hartford with her.  During this week the main concern is inflammation around her heart.  After she is cleared by the hospital she will come home.  She will be at home (with trips to CCMC for check-ups) for approximately a month before being allowed to return to school.

   We are currently unsure about visitation, in the hospital or at home afterward. So,  If you live nearby and would like to stop in, please check in first with Al or I. We have had many questions by friends and family in regards to what they can do to help us.  As you can imagine, though the surgeons use the word “routine”, open heart surgery on your child comes with much stress.  We are not entirely sure what we will need over the next few months.  If you feel you want or need to do something, we are working on a list of things that could help Amelia and our family.  Just contact us.  Otherwise, we just ask of our friends and family the obvious...just give us a "free pass" for a bit here.  Accept our apology in advance for not calling back, or not wanting to go out, or forgetting things... and on the same hand...be there...call us back...come out if we need to get out..don't forget about us :-)  you know....the things you already do :-)   Thank you!

Sunday

Sunday.  Smooth Jazz Brunch on the radio.  Cleaning the house is my task for today.  Not just cleaning, like..toothbrush, toothpick, under, over, behind cleaning.  No room is left untouched.  Sometimes it is worse than others. Sometimes it is just Sunday cleaning...sometimes it is like this Sunday.   This Sunday, it was the house, sunporch, decks, garage... Then comes dinner.  It has to be perfect. Labor intensive five star perfect and with wine to pair, of course.  It is my favorite day.  THIS is what I love...and the more kids running around during the process the better.

Today is Monday.  I feel like I've been beaten, run over, left for dead.  Every muscle aches from the top of my neck down to my feet.  I still haven't figured it out.  It is almost like self-inflicted punishment but I don't know what for.  I LOVE it.  I always remember, back when I managed the vineyard, how many cleaners I never had return because I could do a better job myself...and I did...don't get me wrong.  I just thing somehow..its punishment.  

Besides cleaning my house ( :-) ) I have achieved some other accomplishments this week.

I took the family to ECAD Dobbs Ferry, NY to re-certify Crane.  Every year I must pass our Public Access Exam and other ECAD requirements in order to keep Crane in my possession and be legal to bring her into public places with me.  One of the requirements is weight.  The dogs can be no more or no less than 5lbs from the weight at graduation.  Crane's weight was 64lbs at graduation.  At testing she weighed in at 66lbs.  Those of you with Labs and Retrievers know how difficult this is.  As far as the Public Access Exam, Crane was a star.  At one point the instructor had us go up an elevator (loading and unloading from it correctly).  She had me bring Crane to one end of the hall, give her the "down-stay" command and walk all the way to the far end of the building.  She told me I had to turn and face Crane, call her to me and get her in the "side" or "heal" position.  Oh, and also.....there was beef jerky in 2 locations between her and I.  ...  ...  Great .. ... Oh, and by the way, if she eats it....I fail.

Here goes nothing.  I turn, call Crane, and what does she do?  She stops....at the jerky....she sniffs...  I tell her NO sternly.  She opens her mouth....  She reaches down..... She grabs her leash and she comes running right at me, gives me her leash and lines up on my blind side without me even having to tell her the command.  THAT is my dog.  THAT is who she is!  Not only did she pass, the trainers were slightly sad that she did not even look at them, acknowledge them.  They are the ones that made her who she is.  So. I took off her vest and gave her the "release" command and she licked and jumped al over them like she was a pup again,  :)  They then issued us our new license and off to Legoland we went!!

I also had the Tirerack Street Survival experience this week.  The class was held at Thompson Motor Speedway.  It is meant for teen drivers.  To make them realize the unexpected scenarios that can happen while driving and how to properly handle them.  I have been driving fine since the vision loss in my right eye.  I always have driven safely...So I think.  I've had my license for 24 years and have one accident on record.  I also have three young kids.  So, "I think" isn't good enough for me. I wanted to make sure I can still react quick in unforeseen incidents.  This class was perfect.  The classroom stuff....it was like teen driver's ed, but out on the track..that was a different story.  They had us do 4 different driving exercises: Panic braking, slalom, skid pad and emergency lane change.  They all put the driver and car to the test.  I got to see how fast my car accelerated from a standstill and then how fast I could get it to stop in a straight line.  I was able to experience weight load ratio as it affects the potential of roll over.  I tested my skills on making a split decision with emergency lane changes.  Then, there was my favorite, the skid pad.  The fire department flooded the skid pad and we were able to see how much it would take for our cars to break loose and loose traction.  Exhilarating!  Well, as exhilarating as it can get in a minivan :).

https://www.youtube.com/watch?v=9AfDHF8pMww

So now what?  Nothing great.  I go to Yale this week.  It is my annual MRI and Neurology appointment.  Among other issues, my treatment with Tysabri will come up.  Recommended treatment period is 2 yrs.  I am soon approaching that.  So, I need to choose whether to increase my risk of PMI, this non-curable brain degrading disease or try my luck at another treatment.  Yay.  

I will keep you posted

Until then, here's some extra reading material by yours truly.

 http://mymsaa.org/publications/motivator/winter-spring15/inspire/

www.mybeautifullifewithms.com

Welcome!

Where to start?  It seems like it has been so long since I have written a blog post.  So, I guess I will start with what I have been up to:
Last month was officially my last month as President of the PTO at our local Elementary School. This decision, obviously, came with many mixed emotions. I loved loved loved the position, the close relationships with teachers, getting to know 176 kids.  However, with a small town such as ours, even small roles become politically involved. That part, I will not miss. I will terribly miss the others.  Also, with all my upcoming events, I suppose I had to give up something.

So, all this free time now..what am I doing with it?  Well, The Goshen Farmers Market starts up this Saturday.

 This has been my "baby" for 2 years now.  A very passionate group of locals started this market up years ago. They are dedicated and "never-give-uppers" but the market turned into a few vendors sitting around on Saturdays in a school parking lot for a couple "never-give-upper" customers.  So, (you know me) I felt compelled to help.  It's been 2 years and with the help of the market founders and some other key people we are a CT State certified market.  We are one of only a few markets at a CT Vineyard. We have live music, kids activities, vendors galore, etc...it is wonderful....and A LOT of work.  I have taken on "the official" role of Treasurer and Marketing Director.  However, there is much more that keeps the wheels turning: music coordination, craft and activity planning, insurance coordination, emails, event listing social media, press releases, branding, vendor recruitment, sponsorship recruitment, website updating, etc, etc...  So, is THIS weekend,  If you are local- PLEASE BE THERE.  At least check out our website www.goshenfarmersmarket.com  or Facebook at www.facebook.com/goshenfarmersmarket
These were my accomplishments this week:

My other accomplishments this week? I finished my first book.  Yes, I wrote a book!  It's just a "starter" book to get the feel of what it takes to go through the publishing process.  If I am lucky, in 6-8 months, I may possibly get a reply from one (or maybe more) of the 30 or so publishers I sent the manuscript to and I might get an offer to have it published. By then I will hopefully have completed my second (It's currently all in my head) and then my third...which will take quite a while I imagine.

What else?  Al and I are graduating next week.  Some of you know that we have been taking a training course for the past 11 weeks.  Next week we will become certified Foster/Adoptive Parents through the state of CT.  http://www.ctfosteradopt.com/fosteradopt/cwp/view.asp?a=3795&Q=498606.  So, there is a chance you will see us with another child..maybe more over the future months and years.  We are not allowed to post pictures of our foster children on Facebook and we are not allowed to tell you about their history, their family or why they are in foster care (nor do we want to).  I think back to one of my favorite books, Choosing Civility; The 25 rules of considerate conduct(a must read).  Just because someone is curious about something doesn't justify their question or deem it appropriate.  We just hope our friends and family will welcome our children and know how happy and fulfilled this venture makes us.  This is something we each always wanted to do and now that we can't have more kids ourselves, what better time to possibly help others.  We thank you, in advance, for your support and respect!

Relating to the above,  here is my soap box lecture / pet peeve for this blog:  Making people feel welcomed.  I have spent a lot of time thinking about this lately, how some people are welcoming and comforting towards others and some are not.  It takes a lot of strength and the ability to put yourself aside to actually welcome people into your life.  To share your life with them and make them feel comforted and a part of your life.  I believe a lot of people aren't capable of this because of such things as they are too self-absorbed, or too consumed with their own agenda.  Or, they are cold, insensitive or compartmentalized to some degree.  When people are like this, it doesn't make others feel welcomed or comfortable and when you're not comfortable you leave.  Sure, sharing your life openly sometimes comes with its downfalls.  It makes you vulnerable, it opens you up to "favors" because people feel comfortable and...sometimes...people feel comfortable that you DON'T want to.  All of those have their positive twists though.  I think feeling vulnerable is a good lesson, it's humbling. Favors, well as long as they are well intended, are only time or money. As far as people feeling welcomed into your life that you wouldn't necessarily want to feel that way?  You are leading by example.  You are teaching others how to behave with grace and sensitivity.  Just an observation about life that I never would have noticed prior to my new life, the one with MS.  I'm done.

OK.  So, I always go to extremes right?  Speaking of that, I decided I should refresh my driving skills.  I believe I am still a safe driver.  However, with my limited vision, I want to be sure I can handle unforeseen incidents.  So, I signed up for a program called "Street Survival".  It is held at Thompson Motor Speedway and its next weekend.  I CANNOT wait. We are making a trip of it and also visiting the Worcester Ecotarium.  The event coordinator for Street Survival, instructor and race car driver coincedentally only has vision in one eye also.  Cool, huh?  Well,,,,, you know what I mean.

I guess I should mention my MS huh?  It is holding steady.  I do have many more good days than bad lately.  Though, I still have daily nagging symptoms, I seem to be able to push through them better. My one weak spot is headaches.  Extreme headaches.  It was recommended that I go to a headache specialist to determine if they are nerve related, ocular or maybe cluster but I really see the doctor way too much.  For now, I hang in until I just feel like I am facing 2 options: 1. death or 2. Hospital.  Then, I call up Al and he puts me on oxygen for a bit and gives me a pain pill. That seems to take the edge off.  Otherwise, I am just plugging along.

I am coming up on A YEAR now that I have had Crane, my Service Dog. I still cannot comprehend that.  Time flies.  Each year I have to get re-certified and pass a Public Access Exam to remain able to go into public places with her.  The laws are cracking down and no longer are Therapy or Emotional Support dogs allowed to go out into restricted public places.  So, this exam and re-licensing is important.  After my third year, Crane is officially mine :)  I am very lucky to have her.  She is SUCH a help and comfort.

I will leave off on that note, as I have a trillion things to do.  The kids are now in summer camp and when that is over it is school FOR ALL OF THEM. WOW!!!!  Think of what I will be able to take on then ;)

Cordially,

    Tina

www.mybeautifullifewithms.com

"Living The Dream"....

     I recently visited the website of an old friend. They invite the "everyday person" to live the "good life".  They offer to bring "these people" opportunities usually only available to the "inner circle".  Yeah...  I kid you not!  This friend's statement of "living the dream" always struck a nerve with me.  Maybe because I was a single mom struggling to get by and provide the best I could for my daughter and I.  Or maybe because this phrase he used wasn't used as I would use it, but as an elitist.  I think he thinks everyone's idea of "living the dream" is "living HIS dream".  I am Living The Dream too.  I have an amazing family, incredible kids, a wonderful home, great neighborhood, etc....  I could go on but you all know my motto, My Beautiful life, with m.s..  I can guarantee the majority of people that know me would not want MY dream, MY beautiful life.
  On the other end of the spectrum,  I also hear other people talk and judge in regards to disability.  I suppose I used to do this as well.  As I said in my last blog, in words of a friend: There are just things you don't understand until you are humbled.  I used to think "why are THEY on disability?".  They are taking advantage of the system.  Well, now here I sit, on the other side of the fence.  Most people that see me, I am SURE would disagree that I should be on disability with ALL the things I can do. After all, I look fine.  However, everyone's situation is deeper than just a look.  Could I get a job?  Probably. Would it be difficult? Extremely.  Could I do the job I used to before MS?  Not a chance.  People on the outside see what they want.  They do not see the things I CANNOT do.  Some days I cannot walk. Some days my vision is so off that I do not drive and I cannot type because I hit the wrong keys.  Same with filing papers, I just cannot see straight enough to differentiate between files.  I cannot do simple things in my life, like bike, or skate, or even run.  Take a second and imagine that!  I have 3 kids.  I c-a-n-n-o-t run, bike or skate with them. Sure, we do other things and I boast that fact because there are only "other things" that I can do with them.  That is a price I pay.  That is a price I pay to be able to be home with my children and get the small amount of Federal Income the government thinks I need to get by.  I make the best of it.  As a matter of fact, I am SO good at making the best of it that I honestly feel I am LIVING THE DREAM.  Huh.  Look at that.  Full circle!
More to come soon.....

I am not the person I used to be

I get feedback and concern from the realism of my blogs. People think I'm not in a good place, obviously people that do not have an incurable illness.  Nonetheless, here's to them:

I am not one to brag.  I believe in being humble and simple and down to earth.  That being said:
I pride myself on taking care of my house and 3 children.
In a mere 13 weeks my husband and I will be approved foster/adoptive parents.
I am a Beekeeper
I, obviously, am an avid blogger and strive to help people by it's posts
I am the local elementary school PTO President.
I am The Goshen Farmers Market Treasurer and Marketing Director.
I am a member and on the House Committee of Torrington Country Club.
I am a Volunteer/Representative for ECAD (Educated Canines Assisting with Disabilities)
I, and my family, are Home Handlers for ECAD and take Service Dogs in Training home on the
   weekends.
I make Goat Milk Soaps and All Natural Body Products
I help local friends establish their marketing techniques and websites.
I have 2 dogs, more rabbits than I can count, a goat, a lovely tank full of tropical fish and HAD (as of
    a month ago, a horse).
I am a flying enthusiast, whenever money allows.
I am an artist, whenever time allows
I am a member of the local Congregational Church (though I would like to attend more than I do).
I am a wine enthusiast and hold an advanced degree (with Merit) from the Wine and Spirits        Education Trust.
I have a passion for preparing and cooking exquisite meals for family and friends.
I love to garden and get my hands dirty and watch things grow.
I could go on... and on... and on..


One of my family members came to see me the other day and told me that "people at her work talk about you"...I roll my eyes...  "They are worried about you,  they say  you do too much".  Uhh Huhhh.  You know when you don't continue to work on a skill, you lose the ability to do it well.  If it wasn't for the hours and hours I spent writing and re-writing the same thing, page after page, in my journal while in the hospital and after I got home, I know I would still not be able to write. So, I do stuff.  Everything.  Part of it might be fear, yes.  If I let my brain take a break I feel there is a chance something, some lesion or something, could sneak in and get it...to slow me down.  Some people watch TV (movies here and or a mini-series), some people take naps, are avid readers, sit down for a drink with friends (I do this occasionally), have a long commute, etc...  I simply take all that "static time" and fill it with other things.

I do all of this, not at all like I once used to.  I also don't react to things or people like I once used to. Then again, I am not the same person I used to be... far from it.

Normal bad isn't SO bad

   I wonder, sometimes, why I cannot just have a "normal" bad day or "normal" bad week anymore.  I recall bad days from the past and, granted some were BAD but, for the most part they really were quite tolerable. These last few weeks have not been great.
   I had to put my horse down last week.  My horse.  My horse that I got when she was one year old and I was in eighth grade.  My best friend...my only friend sometimes.  We took on the world together.  She was there through first boyfriends... and first break ups..  through high school, through college, through actual broken hearts (not just first break ups that you think are actual broken hearts but you come to realize that was so so SO far from reality), through moving away from my family and across the country, through divorce, my first child...remarriage..moving 15 times in 14 years...my second child...third child :)  :)  and through my diagnosis of MS.  I retired her months before my diagnosis.  She showed severe weakness in her hind end and I knew it wasn't fair to ride her anymore.  My friends (amazing friends) offered for me to retire her on their farm across town.  They had just one other horse on a farm full of goats.  Horses aren't like dogs.  They are gregarious and therefore don't like being the only horse.  It wasn't too long after that that I got sick.  I hadn't been able to even walk out to see her much over the past two years but I know she was taken care of well.  I knew, each winter, for the past few that it might be her last. Though I used to tell everyone, when they asked how long horses live, that Princess would live forever.  It was my way of never having to think that someday she might be gone.  Simple as that.  She will live forever.  I remember, in college, we used to go jogging together.  I would load her in the trailer, take her to The Kentucky Horse Park and go running.  We would make a point to always stop by a pay phone (yes, pay phone) and call home to say Hi.  I remember being in class on a beautiful day and the next thing I knew I would be on her back galloping through the KY Bluegrass.....  So long school.

    My friend called to let me know that her horse (Princess's pasture mate) was on his third day of colic (severe intestinal distress of one type or another) and might have to be put down.  Images instantly flooded through my head. I pictured her hind end weakness, here rear suspensory ligaments nearly giving out, watching her walk occasionally like she was walking on glass because her feet were uncomfortable, seeing balls of hay all over the ground that she had to spit out because she didn't have enough teeth to chew hay anymore.  She had three medical events in her lifetime that she should not have recovered from ... but did.  Now I pictured her being alone.  All alone...through a bitter cold snowy winter.  I couldn't do it.  I called back my friend.  She said the vet was there NOW putting Princess's friend to sleep.
   I laid in the field with her as she took her last breath.  It was SO cold.  It was snowing.  It has snowed each day since.  The wind has howled.  The nights have been SO long.  I laid there with her until her body wasn't able to keep me warm anymore.  I pet her and talked to her like I haven't been able to do in years. Princess and I were together for about 26 years. If only she could tell me stories from our past as well, I would have been there for another 26, just listening.
   Yesterday was my Tysabri day and Neurology appointment.  Its been 6 months since Ive seen the doctor.  She was thrilled to meet Crane.  She asked how I was doing.  "Tired...VERY Tired" I say.  "Like so tired you just can't snap out of it?".  "Yes".  "So tired you feel you cant cope?".  "Yes".  "So tired you feel your legs cant hold you up?".  "Yes, yes yes"...  "Are you taking anything for it?"  My lovely husband mumbles cynically from beside me "coffee, lots of coffee".  Yes, I admitted to her that I'm up to about 2 if not 3 small to medium coffees a day.  So she says "No, I mean medicine?". WHATTTT?????  There is medicine for that??  Amazing!  I found out there is also medicine to help my leg spasticity so hopefully I can sleep and there is medicine for the prickly feeling in my face.  It wont make the feeling come back, but might prevent the feeling that I have a cactus jammed in the right side of my mouth.  I cannot stand taking pills, but for these things, I'm sure the heck going to try.
  We talked more about Crane.  She wanted to know everything. I told her all about ECAD and the process of raising money and going through training and how much Crane helps me.  This time SHE was amazed.  She said she wanted to know all the details because she has a notebook that she keeps of all the positive things she hears.  Now, imagine that.  She is one of the top Neuro, specifically MS,  docs in the US. She has computers full of info.  She has teams of doctors working under her.  Yet, she keeps a small notebook of positive things she hears about her MS patients.  If THAT isn't depressing nothing is.
  The rest of my week was interspersed with the same level of events, though I am just too low on energy to recall them all.

HAPPY New Year....

     I will try this again.  After my last blog I received FB messages, phone calls, emails and texts from friends, family and even my Pastor.  Thank you!  Thank you for your concern.  As I explained to people, I have a "Beautiful Life", A wonderful, beautiful life...but I am also realistic.  I write this blog for a few reasons: 1. For my children.  So they can look back and read a journal of my life. 2. For my family and friends.  So they can know and understand what exactly Im going through.  3. For me.  So I can get the thoughts that swirl around in my head on "paper" and off my mind.  4. For others that might be going through something like I am going through. So they can compare and have someone to relate to and maybe be inspired by. 5.  For the future.  Hopefully some day each blog post will be the basis for a chapter in my book.

  So... If my blog was all fluffy bunnies (got 'em)

.. and pig tails and flowers (yep)

...and rum with honey fruit and berries (check)

....and warm puppies (Uh Huh)...

(All these since last blog BTW)

Then what good would that do anyone? It wouldn't get the thoughts to stop swirling in my brain, my book would be unrealistic, no one dealing with what I am would be able to compare, my family would be in the dark and my kids would look back and wonder why if I felt so good and did so much why I DIDNT do so much and was so different from other parents.
My "Beautiful Life......with ms".  That is what Multiple Sclerosis is.  Some days are good and some days, not so much.  I live with it all.  My family deals with it all.  I write about it (almost) all.  And, you read it all (those of you that want to). 
I thank you, everyone in my life, for understanding it all!
HAPPY New Year! Good luck with all your resolutions.  I will observe and learn from them and get mine ready for May 18th.  The turning of my year.

Happy NEW Year???

  Some people go by Calendar year, some go by fiscal year.  My years now begin and end on May 18th.  That is when my old life ended and new began. That is when I got struck with and formally diagnosed with MS.  May 18th. Four months to go until my second May 18th.  Thanksgiving and Christmas come and go, no big deal.  I don't know why New Year's Day is a national holiday...because too many people are hung-over? I turned 40 this year, just another day.  Hold on...Ive got to go take care of a crying child....

   OK....I'm back.. (I would have never been able to do that a year and a half ago)...  "MS doesn't kill you", "It wont leave your child without a mom.  You will be there to help them grow up".   This is what friends and family told me.   MS doesn't kill you....  you just wish it would sometimes.  I had a friend die recently. Her memorial is tomorrow.  A friend that had a terrible life dealt to her and her AND her husband died too young, too young to raise their kids, too young to deal with bills and with mortgage payments and retirement and.. and...  She left me feeling almost jealous.  How could she get out of all of this so easy?  I know.....life and children are a blessing and I treasure every second I can...but I am tired.  I am disoriented.  I have half my vision.  Half my nerves function normally.  Half the time I feel like I am drunk or hung over.  All the time, overwhelmed.  That will never change.  

THAT...is a terrible way to start a blog.

THAT... is light and happy compared to the mental places and thoughts I've been/had.  Part of it, I'm sure was a drastic change in physical life and part was mental symptoms of MS.  But, I remember, clearly. I wish I didn't remember SO clearly..  those days and weeks and months while I was diagnosed, in and out of hospitals, fastly losing ground.  Not being able to walk, to lift my hands, to hold my kids, to see.  I also do, luckily, remember things coming back. I remember how much work I did with my therapists to be able to walk normally and speak normally and write... oh my god how I missed being able to write ..and how tough that was to get back.  I had a journal and just wrote phrases over and over again in my weak, sketchy hand writing.  Even now, when I write a school note for my daughter, or a shopping list for my husband, I look at it a few times and think how terrible my penmanship is now.  I guess , though, there was a time when it was worse.  I suppose everything used to be worse.

    I like staying in now.  I like staying in for days on end.  I like lazy days of doing nothing but house work and taking care of the kids (which means 99% of my day is busy cleaning, playing, prepping meals, doing laundry, letting dogs in and out, emailing, taking care of neighborhood children).  I don't tolerate the cold very well.  I get exhausted and overwhelmed running errands with all the kids.  Maybe its just winter blues as I seemed to be able to take much more on in the summer  months....or maybe something has changed...or is about to?  There is unstoppable fear of that.  The doctors were finally able to stop the rapid onset of symptoms, but for how long?  When you throw an apple in the air, it comes down.  That is just a fact.
   Moving on...

  My husband and I asked the kids prior to Christmas if they wanted gifts from us, or a getaway instead.  They were unanimously in favor of a road trip.  They LOVE hotels.  They don't care where we go, they LOVE it.  So, I booked a hotel with an indoor pool and some attractions nearby and off we went.

 These little overnights are a great way for us to re-connect as a family.  We leave the cell phones and tablets and tv, etc..  So, we ended up going to a Brunch with Santa at Sturbridge Village (I figured it doesn't get too much more genuine round the holidays than Sturbridge and since we like to instill the REAL meaning of Christmas, this would be the place).  They had a brunch of ice cream, waffles, desserts, cocoa and more.

We had brunch with the jolly old man and then took on the pool and hot tub at the hotel, Sturbridge Host Hotel.  They soaked up every second.  We went to a fireside dinner at the Oxhead Tavern where again they got anything they wanted to eat.

 After dinner we infested the pool area again and then resorted to our room where we followed through with our hotel tradition of a book reading. .. This time though, since it was so close to Christmas, we donned our new Christmas PJs. I read a book Al picked out a week or so earlier called The Book with No Pictures (I highly recommend it).  It was in perfect theme for the no phones, tv, electronics...or pictures..

 After the book we broke out the glow sticks (another hotel tradition) and feasted on cold leftovers.  It was then that my son snuggled up beside me and said "This is THE BEST night EVER".  I asked why, although I already knew he would go on and on about Santa and the hot tub and the hotel adventures.  He replied " Because I got to snuggle with my mom while she read a story and then I got to eat a cold hot dog".

       Now....  Its not like I don't spend time with them or read stories to them or tuck them in every night, but it is why I LOVE these little road trips.  Every little thing takes on more meaning.

The next day, before heading home, we visited Yankee Candle,.. for HOURS.

 Another wonderful trip!

     Seeing as I like to stay in, we hosted our Family Christmas Eve.

 It was wonderful.  It was amazing to see the little ones play like me and my cousins once did.  I remember past Christmas Eves at my Grand Parents, the cousins would run and play for hours in the basement, only being summoned up to leave them and drive home.  I am blessed to be able to witness that.  I don't think we would have if someone else hosted Christmas.  .  .  I read my kids their annual (MY annual) Christmas story(to follow).  We threw reindeer food out on the lawn and I tucked them in. They fell asleep in under 15 minutes.  Memories I will keep forever.  Memories I am glad, despite my "deficits" to be here for.  I guess that is it.  Good outweighs bad this time.

      I took a month off from just about everything in my life to slow down and feel less overwhelmed and create more of these memories.  It is amazing how few of my friends and family and community that I thought were so close DIDN'T question me sucking back from reality, public, obligations, social scene, etc...  Then again, I always correct people when they say "You are not alone".  Really, no matter how supported you are, you ARE alone in your battles, your glory, your memories, your life. So, you should make the best of it, for YOU.

The Christmas Story, as posted in the New York Times years and years ago

You and I are aware of this, as are our older boys and girls; but to very young children the language is not quite as comprehensible. To them, Christmas is a time of excitement, glamour and Santa Claus. That is as it should be. Nevertheless, the reason for our celebration is a deeply religious one, and even little children should understand this.

With that thought in mind I once wrote the story of the first Christmas, told in very simple language for little girls and boys. Judging from the response to it, it filled a need. So, each December, we re-print it. Here is the story:

Once upon a time, far, far away, and long ago – long before even your Grandmother and Grandfather’s Grandmother was born – this story begins.

There was then a little town called Bethlehem, and many people were travelling toward it from all the country round. But all those men and women were not travelling as we do nowadays – on trains or in cars, and of course not by airplanes. They were all walking – miles and miles and miles; or riding on donkeys; or on the backs of camels.

Now among all those that were going from their homes towards the little town of Bethlehem were a man named Joseph and a young woman named Mary. Mary was riding a donkey and Joseph was walking beside her. Joseph was very anxious because it was night, and the stars had already come out in the dark blue sky, in that land so far away and so long ago – just the way the stars will come out over our house on Christmas Eve. And Joseph was worried.

He knew they must find a place to sleep and very soon, because Mary was going to have a little baby and its mother must have a warm and cozy place to rest. Still, though they looked everywhere, there seemed to be no room for them anywhere. Every house and every Inn was filled. But at last, when he was quite discouraged, Joseph found a stable, in which they could be warm and rest. And there, with the sweet smell of hay, with the soft warm breathing of donkeys and perhaps little lambs about them, Mary’s baby was born – Jesus, the little Christ Child. Then Mary, his mother, wrapped Him closely round and round with white linen, as they did to little newborn babies in those days in that land, and laid Him – not in a crib, but in a manger, right there, in the stable. And the animals, warm and quite, lay or stood nearby.

Outside the stable, over this Christ-Child’s funny little bed, high in the dark blue sky a star seemed to shine, with greater brightness than any other star in the heavens. And the shepherds, tending their sheep far off, thought the star beckoned them to the Baby Jesus. And three great kings, also far off, thought that the bright star in the blue sky beckoned them too, to come to where Baby Jesus lay. So they all followed the star; and at last it led them to the manger.

There they all knelt down and worshiped Him, and the three great kings laid precious gifts of gold and rare and fragrant perfume before the little Baby Jesus. And now, every year since Christ was born we remember His birthday, and we celebrate it, and call it Christmas!